Friday, December 09, 2011

Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”

Where to start?

In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.

But that doesn’t make for much of a blog post, does it?

For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.

For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.

For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.

For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.

For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.

For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.

For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.

And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.

Friday, November 11, 2011

Two years ago, I wrote about being grateful for the knowledge that comes with a celiac diagnosis, and more than that, for the simple gift of being present at Thanksgiving, instead of being in the hospital.

Last year, I wrote about being grateful for the amazing blessing of my newborn baby girl, and for all the dedicated health care professionals, advanced technology, and support that allowed both of us to make it. I also wrote about how complicated an emotion gratitude can be when to comes to serious illness.

Here we are, twelve months later.

Motherhood. In the best way possible, it throws all the pieces of you up in the air and when they settle back down to the ground, they are forever rearranged. Family illness, work, writing a Book, (and yes, that’s a capital “B” in my head)—in ways less luminous and more wearying, they also throw up the pieces of me, the pieces that make up us, and reconfigure them all.

And here I am, a year since my last gratitude post, a year removed from the immediacy of birth and the physicality of newborn-hood. A year removed from the decision to re-structure the whole book, and now some 85,000 words in a new direction. A year and six classes and multiple committees removed from the end of maternity leave. A year of negotiations and boundaries and compromises that accompany being a mother and a daughter, a patient and a caregiver.

Amid so many changes, I am at extremes (as usual).

I find myself grateful for the smaller details, noticing them in more vivid technicolor than the pale backdrop of daily life: a chuckle over the monitor; an unsolicited hug. An unexpectedly light commute that means I am home earlier to play; unseasonably warm weather that means one more day at the playground. Putting on my headphones and squeezing in some revision hours; finishing the very last paper of a deluge. Making time to try a new recipe; eating dinner in the dining room together because that makes a Wednesday night something better than. The magic of a Thursday night, when the meat of the week is behind me. Coffee with a friend. A clean house.

And the much bigger stuff: To witness my husband take a risk and follow his dream, so that when he tells our daughter to do that some day, it will not ring hollow. To able to work on a book that explores questions I didn’t know the answers to, because really what more can a nonfiction writer ask for?

And the biggest thing of all, the thing that is immeasurable, the thing that still makes me catch my breath in the grocery store aisle and smile to myself when I think of a certain smile: grateful to be somebody’s mother, grateful to be her mother.

Sunday, November 06, 2011

“So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?”

When I try to think of the big picture concepts here, I get a little bogged down. There are so many things I could say, and I end up staring at a blank screen, precious moments of time slipping away. More just write, already and less perseverating, shall we?

Honestly, I’m just not in the right zone to write specifically about illness right now. I’m in a tunnel of baby-deadlines-more deadlines-caffeine and focused on getting through the day, and getting enough done that I can get to sleep. Like it or not, good for me or not, there isn’t a lot of mental space left to think about or process anything related to illness, even when its immediacy and urgency wakes me up at 3am.

So, I thought about the stories and thoughts that have inspired me this week, the things that make me stop and pause as a writer, a professor, a mother, a citizen, and, yes, a patient, too. I’m not in the doldrums of illness, but I am definitely in a place where a few good reminders about perspective, trust, curiosity, and discovery are nourishing.

--Have you read the eulogy for Steve Jobs written by his sister? It’s a rich, personable portrait of a man whose vision is a force in many our lives, and it’s also a beautiful look at love, creativity, and passion. His last words were, “Oh wow. Oh wow. Oh wow.” Pretty powerful.

--As the owner of two rescue dogs with sad pasts, I am always moved by stories of redemption and hope. I cam across this emotional article about abuse, trauma, trust, and resiliency for both a dog and her owner. While the animal’s abuse haunts me, the way both have been able to re-build their lives and trust unconditionally are truly inspirational to me. Living in the moment and letting go of pain, frustration, anger, and doubt are never easy, but this really brings to light what is possible when we do.

--I have always felt pretty fortunate to teach the classes I do (writing in the health sciences). My students have been and are passionate about their future careers as health care providers, are they are intellectually curious and engaged, and as a professor and a patient, they me feel just that much more hopeful about the future. Patients would be lucky to have some of these students as their doctors, nurses, pharmacists, and PTs. Every semester, reading their research papers and seeing the inspired issues they delve into makes me appreciate this more.

--Watching this little girl of mine grow from a baby into a walking-talking-signing-laughing-teasing-bike-riding toddler is, quite simply, amazing. No matter what else is going on in my day, in my body, in the world in general, watching her develop, experience new things, and approach life with an independent, open spirit is the essence of inspiring. Every day is a new opportunity to learn, to grow, and to build on what was already there, and that’s a lesson that helps everyone, I think.

Thursday, October 27, 2011

So I’m now a year into this whole balancing motherhood-working-illness thing. I originally planned to write this post, the first in a two-part series, three weeks ago, and yet here I am. There’s a lesson there for anyone tempted enough to write about balance:

It doesn’t really exist.

Reflecting on the whole baby/book/job/illnesses/family illness/new business scenario—and while my particular brand of hectic may differ from yours, the point is, we’re all managing a lot of moving parts—I think it’s more accurate to say that striving to prioritize is much more useful than striving for balance. Something will always have to give, and the real lesson is learning how to be okay with that.

My daughter, my family unit, come first. Whatever else I have going on immediately fall into place behind her needs and what is best for her and by extension, what is best for our family. That priority is at the heart of the constant negotiations that come with a non-traditional full-time work situation (part on campus, part from home). The amount of time I spend with her every day and the flexibility I have to do things with her make up for the challenges involved in squeezing a lot of that work in late at night, early in the morning, and on weekends—without hesitation.

It is worth it, it is indescribably worth it; it is just not easy.

But it’s not supposed to be.

It is easy to prioritize when things operate as we assume they will, when we can plan out our schedule and depend on our productivity. Parenting and chronic illness do not subscribe to predictability.

The really rough patches, the weeks where nothing goes according to plan and illness throws everything out of whack, have been the most illuminating. Times when I am sick and Baby Girl is sick and she needs to go the doctor and I need to go to the doctor and students papers are piling up as quickly as the laundry is and the book revisions are haunting me, when I am worried about her and rocking her and cursing my own stupid infections for making me cough just when her little eyes closed and I startle her awake, are when I have the most clarity:

There will always be papers, and they will eventually get graded. The revisions will get done, just like somehow, some way, the draft got done. The extended family obligations and illness obligations will settle out. The laundry and the dishes and the editing and the phone calls will all get done. The most important thing I can do, that I will ever do, is be there in this moment, physically and mentally. I kiss her damp forehead and whisper in her ear that there is nowhere else I’d rather be.

I have dropped a lot of balls this year. I have missed deadlines (and quite epically, too), I have canceled plans and forgotten tasks. I’ve made promises I haven’t always been able to keep, I’ve disappointed people who have wanted more from me than I physically give. I’ve climbed the stairs at 11pm with coffee in hand, ready to pull a long night in front of the computer, and I’ve put hot coffee in the refrigerator and creamer in the microwave. At points I’ve moved so far from any sort of balance that it is laughable.

But I’ve learned to be okay with that, because I think that my current lack of balance means I am prioritizing as I should. Right now, what matters most (baby and husband, family, students, book, my health) depends on me knowing when to pull back from everything else: when to say no, when to put up boundaries, and when to say all I can do is my best and really believe that is good enough.

A long time ago I saw this quote on Penelope Trunk’s blog: One thing at a time. Most important thing first. Start now. I may have even blogged about that line before. Honestly, I repeat it to myself often, and I find that it’s knowing how to judge what are the most important things and letting go of the white noise that is the key.

While a lot has slipped through the cracks, what I’ve gotten in exchange is incomparable.

(And because I want this writing to be more of a priority again, I am holding myself accountable: next up, the second piece in this series about all the pragmatic stuff that helps keep life in motion. A happy baby who sleeps great, an extremely hands-on husband, and a whole group of people who love this child, support this book, and care about my family? That helps!)

Tuesday, October 11, 2011

I joke that our daughter needs an intervention. Really, the child is obsessed with Baby Signing Time.

Haven’t heard of these DVDs of the oh-so-grating musical score? I hadn’t either, until a few mothers whose blogs I read started raving about them. I know some parents in real life who taught their babies sign language, and I’d read a few articles that talked about its benefits for babies, but I didn’t take really take the plunge with Baby Signing Time until Baby Girl was about 10 months old.

Now, we have a baby who will point at the TV and sign “please,” and if we don’t put it on, she points to the remote as if to say, “Listen, all you need to do turn it on. I’ll take it from here.” Sometimes, I swear she hardly blinks she is so intent on watching. It’s hilarious, but also? It’s a bit much, and from what I’ve read on other blogs, the obsession is fairly universal among the baby set.

To backtrack a bit, we did teach her a couple of the most basic signs at about 6 months—“more,” “all done,” and “cup,” and she caught on pretty quickly. Her sitter knows a ton of signs, and has been great about reinforcing them. But then she started saying a word or two, and then a few more, and our rudimentary signing slipped to the wayside because we were so caught up in hearing her words. And we got a bit lazy about it.

At around 8 months, it really hit me how much of the world she was absorbing, how much babies in general absorb, and just how much was going on in that little mind of hers—she recognized colors, could find hidden toys when asked, etc. Though she was saying a handful of words, I really wanted to find the right way to tap into what else she understood.

“We just need to ask her the right questions,” I said to my pediatrician, marveling at how amazing the experience of watching a little human emerge really is. Perhaps signing was one way for us to do that?

I hesitated at first, not because I wasn’t sure about signing but because I wasn’t wild about the thought of her watching a DVD (yes, we’ve read the American Academy of Pediatrics’ guidelines on infants and television, and we don’t disagree.) But the DVDs are short, and one of us sits and watches and signs along with her, so it’s an interactive thing. (And this explains why I currently have “One shoe, two shoes,” on repeat in my head right now.)

Between what we’ve learned from signing along with her and all the signs her sitter knows and uses, in the past month or so she has really become versatile with her signing. We didn’t realize how much of it translated until she moved past signing things on request. Last week, we said our dogs’ names in passing and she signed “dog.” She will now sign “please” and then indicate what she’s asking for, instead of needing us to ask her to say please after she’s pointed at something. It’s so neat to see her use signs in the appropriate context.

Someone asked me if I was worried signing would stunt her vocabulary development, which is a reasonable question. I’m not, since she says a lot, and since she hears the terms for so many things over and over when she learns the signs for them. In fact, from what I’ve read, signing can enhance vocabulary.

But from a purely day to day perspective, it makes communicating so much easier. She has a way to express the things she can’t yet say, and it’s a blast having meaningful interaction with her where we know she knows what we’re asking. It wasn’t something I set out to do when she was born, but I am happy we stumbled into it. If nothing else, it’s made me really stop and appreciate just how cool it is to witness a baby growing up and learning about his or her world.

Have any of you out there tried signing with your kids? Do you have any insights for those who may have heard about teaching babies to sign but aren’t sure it’s for them?

(And yes, I know this is a chronic illness blog. Stay tuned for some posts of that persuasion soon!)

Finally, with my new fall routine taking shape, a certain little person’s first birthday under our belts (!), and yes, lots of coffee, I have the mental space to piece together my own thoughts on the topic.

I have a somewhat unique perspective on students, teachers, and chronic illness. As a lifelong patient, my entire career as a student has taken place within the context of chronic and often serious illness. As a full-time faculty member with seven years of college instruction behind me, I’ve seen a lot from the other side of the desk, too. I wrote in detail about navigating college with chronic illness in Life Disrupted but here are some brief thoughts for students:

Communicate with your instructors. It is your choice as to how, when, and if you disclose illness and/or disability to your professors, but what I tell students who do fill me in is that I can only help them as much as I am informed. If I know there is a medical situation, or a hospitalization or other event, I can help formulate a plan that minimizes stress and allows students to focus on the most important thing first: their health. I am happy and willing to oblige, but it is much easier to do that if I am aware of at least the basics, rather than finding out after weeks and weeks of missed classes/work that a medical problem exists.

When I was an undergrad and grad student, I usually had a brief chat at the end of the first class where I succinctly described my situation in the context of how it might impact my attendance—for example, infections worsen quickly so I might end up in the hospital unexpectedly. I usually ended by saying while I hoped there would be no complications that semester if there were, I would communicate them as promptly as possible.

Document as much as you can if you know you will need accommodations. With documentation from disability services, medical/health professionals, etc (whatever the particular institution requires), instructors can do a lot to help students with illness succeed in the classroom. Without them, our hands are somewhat tied.

Be proactive.This has a lot of applications. When planning course loads, consider time of day. Some students struggle with early classes, while others know their fatigue or pain is much worse later in the day and earlier classes make more sense. If your conditions are worse in the winter, see if you can spread out classes over the summer session so the load is a little lighter during known trouble times.

If you can, try to be proactive when you feel a flare coming on, or experience a decline in health status and fall behind in work. Even a simple e-mail can do a lot to decrease the stress that goes along with being overwhelmed when you know you are falling behind. Though a bit of an extreme of an example, when I was in the ICU right before exam period in college, I was able to send some brief e-mails just to let my instructors know I was an inpatient and that I would be in touch to make up all missed work as soon as possible. I never experienced anything other than concern and cooperation from my instructors in situations like this.

Since I’ve had many students with physical and mental health conditions in my classes, I know most instructors do, too. I think the Chronic Illness Initiative at DePaul University (where I’ve had the good fortune to teach a course on chronic illness) is a wonderful because it helps serve as a liaison between students with illness and their instructors, but certainly most of us teach without this type of resource. For those in academia who want to help their students, here are some considerations:

Understand the challenging nature of chronic illness. Many of your students who have disclosed illness will not “look” sick and their conditions may flare and worsen unpredictably. The student who was raising her hand in Monday’s class could be incapacitated by Wednesday. We’re more familiar with visible physical disabilities and there are more clear-cut guidelines and accommodations for physical disabilities—chronic illness is a comparatively grayer space.

Be as flexible as you can while still maintaining the classroom’s integrity. If you know there is a verified medical situation, work with your students to prioritize deadlines and assignments so they can catch up without putting their health in jeopardy to do so. Of course you need to be fair to the rest of the class and need to ensure the student in question completes the work required to pass the course, but helping students focus on the most important assignments and being flexible with deadlines can do a lot to keep students from slipping too far.

Hold your students with illness accountable. This is a tough one, but so important. If you’ve worked out a viable plan to catch up on work that all parties have agreed to, then barring further complications or health crises, the student should come through with the work. I can say this without compunction because I’ve been on the other side, and I’ve made those agreements and taken those extensions and kept my word. Students with illness warrant accommodation and flexibility, but being accountable is a critical life skill for them, too.

And of course, above all, respect for both sides goes a long, long way.

Wednesday, August 17, 2011

The world is a decidedly less funny now. Yesterday, an incredibly wise, insightful, humorous, and courageous man succumbed to his lifelong struggle with cystic fibrosis. If you’ve read Life Disrupted, then you remember how sage Brian’s thoughts on life, love, and chronic illness were.

It was a privilege to know Brian and to share a part of his story. The past couple of years were particularly tough for him in terms of disease progression, and he made the decision to join the lung transplant list recently in light of that. In fact, he was called in for a possible lung match when things took a turn with an overwhelming infection. I cannot imagine the emotional roller coaster and devastation of that scenario, especially for the many, many people who loved Brian and supported him every step of the way and were hopeful for new lungs.

Today is a gorgeous sunny day, with low humidity and plenty of blue sky. It is the perfect day for all of us, especially those of us with respiratory problems, to take a deep breath. To inhale and exhale, and appreciate the simple gift that motion is.

It should never be as hard as it is for some.

I can’t think of a better time or a better reason to remind you about the life-saving gift that is organ donation, not just for people with cystic fibrosis or PCD, but for patients of all ages and diagnoses who are waiting—waiting for a cure, or waiting for a chance to extend their lives…simply waiting.

Wednesday, July 27, 2011

But it did, and here we are. And yes, I am still here, despite my unplanned hiatus. And no, there is no major calamity or crisis to report, just life being life and being all kinds of busy and stressful and wonderful and challenging.

At some point in the past couple weeks I read this essay on parenting and writing in the New York Times and between the footnotes, interviews, and word counts and the music classes, swim diapers, and clapping and waving, it stuck.

While a lot of the essay was about the author not wanting her son to hear a reading of her memoir detailing a more colorful time in her life, the part of the essay that resonated with me was the author’s acknowledgment that the people in our lives didn’t necessarily sign up for living with a writer or having their stories out there. That’s something I think about a lot as a nonfiction writer and as a blogger. In fact, I think the more I write, the more tightly I hold their stories against my chest. It is not an easy line to walk—providing enough detail and humanity so the reader is invested without betraying someone else’s privacy.

Naturally I am most cautious when it comes to my daughter. There are so many anecdotes and revelations I think about writing and then wonder if sometime down the road, she will be embarrassed or wish I had refrained, if the line between my story as her mother and her story as her own independent person should be thicker, not more diaphanous. So I write her letters each month and save them in a folder on my desktop, knowing someday I will print them and give them to her and hope I choose my timing well so she doesn’t cringe at the mushiness.

But there are moments that feel appropriate, tiny glimpses of a private life that are meant for public consumption. I can’t believe it has been four months since I wrote a morning snapshot of my sweet girl. I am not one to get too sentimental when one stage ends and another begins because each stage is so much fun and so amazing in its own right, but just like I can’t explain how I blinked and a whole month of the summer has gone by, I don’t know quite how it is that our house doesn’t look as much like a baby lives here anymore.

The bouncy chair she just adored has been stashed away since we were still wearing winter coats. The jumperoo she loved is down the basement because why jump when you can crawl or take teetering, tottering, sideways steps, or swing from one piece of furniture to another? I fear the beloved exersaucer, the scene of so many squeals and pulls and bops! is the next casualty, since the only thing she has used it for since May is something to pull up on and cruise around.

I finally got around to returning the hospital-grade pump, and broke down and cleared out all of the bottles, despite the fact she has used her sippy cup for months. My own little act of denial, I guess. The bottles and the boppy nursing pillow were what gave me pause, and really made me stop and get a little sentimental that she is now 10 months old since they represent such a physical connection to her babyhood. Just tonight as I was weeding through some of her newborn clothes to give to a new baby, a tiny purple Mary Jane sock tumbled out and my breath caught a little at how tiny she once was. (Though so far she has her Mama’s height and can still rock the 6-month clothes…)

It is too good to go this fast.

The baby gates and the sharing entrees with me and the fact that it took twice as long to get through chest PT because she was chasing down the dog, standing next to my therapist trying to pat me, and crawling on my head—all of this points to toddlerhood.

Every stage has been wonderful but even if I could, I would not go back—watching this little person emerge with every wave, every smile, every emphatic shake of her head and every triumphant declaration of “Up!” when she gets up is too good.

Friday, July 01, 2011

Last spring and summer, before things got more complicated, every time I walked by the baby’s room I would stop and enter. I’d walk in and touch something—the side of the crib, a stack of bibs that had been washed and folded, the small pink bunny we bought at the hospital gift shop the day we found out she was a girl. The room gets a ton of sunlight all afternoon, and that’s always how it seemed to me—quiet, peaceful, and full of streaming light.

While an amazing, incredible journey, pregnancy wasn’t always comfortable for me, and I am not talking about all the physical stuff of a high-risk pregnancy. I was awkward in maternity clothing stores, awkward about letting people know I was pregnant (if waiting 16 weeks to tell people beyond the inner sanctum is any indication), awkward even saying the words “I am pregnant.”

It wasn’t because I was waiting for something bad to happen, for that other shoe to drop, or anything like that. It was more that it was hard to believe it was really happening, and if I said it out loud, if it became so very real, I would wake up from the dream. So it was a learning curve, letting go of this safely guarded secret, meshing the real world and all the risks and variables with the dream world.

But her room was different. I know many people, those who have been through infertility and loss and those who haven’t, who wait on decorating and setting up just in case, and I totally get it. I was convinced I’d be that person, too. Instead, there was something comforting about getting it ready early, about the trappings of a baby having a place in our home. (Plus, I had a feeling the third trimester would be…challenging, so I wanted to be prepared).

Her room was my compass, my private act of rebellion and hope. Every time I went in there I smiled, every time I rocked in her glider I felt peace. I needed it to remind me everything would be okay, and to remind me it was not just okay to have hope, it was intrinsic to this whole experience.

Now, I walk into her room and there is a peaceful, sleeping baby or a smiling, wriggling baby read to play. The sunlight streams in just like it did last year and I catch my breath as the two worlds collide, the world of waiting and the world of living, and I exhale.

All of this is on my mind a lot as we near the anniversary of the call that changed so much. Of course I know from firsthand experience that such calls do not just happen at 3am; they happen as you are making dinner quite often, they happen as you’re doing errands, they happen as you are about to have lunch, like this one did. We’ve had lots of calls, but this one I remember in visceral detail.

It was this time last year I learned that it is possible to have your heart literally feel like it will stop beating from fear at the same time it wants to explode into a million pieces with happiness. That grief and sadness and joy and gratitude can co-exist—not easily or gracefully, but they can, and we need them to. Becoming a mother will be forever linked with being my mother’s daughter, and there is a lot to be said for that.

Sometimes, it is hard to believe how much has happened in one year, how much life has changed from last summer to this. It is not just good to be hopeful, but it is a necessary part of being.

Friday, June 24, 2011

Partly, this is because the whole writing-about-writing thing can be a bit too meta unless you’re sitting in a graduate writing workshop surrounded by people who do nothing but write, too.

But mostly, it’s because for awhile now I have been too busy with the writing I do for a living to do much else (except mothering, which comes first, of course). Case in point: it is almost 10 pm on a Friday night and I’m taking a quick break from The Book but expect another hour or two of work before it’s a night. It’s glamorous, the writing life, no?

(And with Le Plague circa May 2011 forging a vengeful comeback, it’s even more glamorous. But I digress…)

It’s been awhile since I’ve been wrapped up this intensely in one project, since I’ve had this much focus. It’s much harder fought than the last time around, or when I was in graduate school, when I wasn’t a full-time lecturer or mother to an infant, so each moment I do carve out for writing is that much more precious.

It’s been good for me to step beyond the role of writing instructor and really dig into the writing process myself in such an all-encompassing way. I’ve re-learned some important things:

1. Know when to walk away: Last summer, when I tried to get as much done as I could before my health imploded and my baby arrived, I was stuck in the “I must write X amount of words per day” rut. This might be good for discipline, but it’s terrible for creativity and for development of ideas. Sometimes, I am really “on” and I can write several thousand words in one chunk of time. Other days, it’s hard going to get more than a few paragraphs. When that happens, when I am forcing each sentence and not saying what I want to say, the best thing to do is step away—sometimes for an early lunch, sometimes for a short walk, sometimes for a few hours. See, ideas need to marinate a little bit, and I need time to figure out what I want to say about what I’ve just written. Usually, it’s when I am walking with the baby or driving the car or making dinner that I solve the problem or make the connection I couldn’t do earlier.

2. Remember the audience: For real, I teach a whole class on writing for different audiences (in the health sciences) and talk about audience so much during the semester I tire of hearing the word. But with a project as big as the one I am working on now, I need to drill that into my brain as much as my students need to hear it. Nowhere is audience more important than in terms of scope—I am doing a ton of research and I always need to stop and ask myself how much context and background I can reasonably expect my audience to have; in class, we call this audience analysis. This dictates how much detail and backstory I fill in, and it is a constant negotiation, probably one of the most difficult parts of writing for me. I have so much information, now how can I organize it? Figuring out what my readers need to know is a huge step.

3. Tell a good story: From novels and short stories to memoirs and serious nonfiction projects, each genre of writing needs to meet this very basic but oh-so-important criterion. The writer needs to engage the readers, to entertain them and make them want to keep reading. This does not change if the subject matter is serious and the research is intense—every writer still needs to make it a good story. I know when I am getting glassy-eyed with what I am writing that it is time to switch gears (or walk away). You can be informative and still be interesting. It is not always an easy thing to balance, but if you’re genuinely interested in the subject matter, that will come through. I always tell my students to think carefully before committing to a research topic—if after a few weeks, they are bored with it and bored with writing it, I will be able to tell that from reading it.

This is an incomplete list, for sure, but it’s a start. Writers and bloggers out there, what can you add?

Friday, June 10, 2011

So, I blinked and weeks have passed since my last post. The usual spin cycle—mothering, writing, being sick, tending to a sick baby—is the culprit but we’re all on the mend and enjoying summer. (The parks! The playgrounds! The beach! So many new things for little eyes and hands to explore…)

(And, somehow, the chapters are slowly coming together. Time is not my friend these days, but such is life, right? There is nothing as clarifying as a deadline, there is nothing as clarifying as a deadline…)

With lots to write but scattered focus, here we go—five things I’m grateful for this Friday.

1.Friends. I know that might sound trite, because really I’m always grateful for my friends, but more specifically, I am grateful for the chance to see my friends. Between a hectic schedule, illness, and in a lot of cases, geography, I don’t get to see a lot of my long-time good friends as often as I’d like. Recently we all coordinated schedules and met up for a quick weekend in Washington, DC, home to our alma mater, Georgetown. Husbands came to help with babies, babies met friends from afar, and it was great. I’ve had to miss the majority of weddings, reunions, trips, and other events over the years because of being sick, and it was so nice to have everything work out this time. (Special thanks to T for being an amazing hostess!)

2.Flying. Again, let me be more specific—I am grateful I was able to fly. It has been years since I’ve been on a plane, between the usual illnesses, plus the high-risk pregnancy and germ lockdown, bed rest and then having a newborn and young infant with some health problems. And while I always come home from a plane trip sick, it was so worth it to get a brief change of pace. (Plus, Baby Girl’s first flight went so well—she smiled away and then slept the entire flight, both ways.)

3. Food. Specifically, feeding Baby Girl food. When she turned six months old, we started solid foods and a sippy cup, expecting both to take awhile to catch on. However, within a couple weeks, she was on to three solid meals a day and using the sippy cup exclusively, save for one bottle at bedtime. She had feeding problems as a newborn, has reflux, and has multiple food allergies and intolerances at this point (hoping she outgrows them all!) so it is amazing to see her enjoy eating so much and thriving. She is small for her age but one look at her chubby cheeks and thighs and it’s clear she is doing great. Everything we’ve tried with her she loves, from chickpeas, spinach, and broccoli pieces to steak, sweet potatoes, and rotisserie chicken (her favorite!) (Next up? Quinoa!) We’ve made all of her food from the start, which is super easy and a lot of fun, and since she’s been feeding herself with her pincer grasp for so long, she can pretty much try anything at this point. If she ends up with long-term food allergies or is celiac, I want her to know so many good foods exist and I don’t ever want her to feel hemmed in by dietary restrictions. While so much can change, for now she is an adventurous and happy eater, and I hope it lasts.

4. Flexibility. I admit, the spring semester kind of chewed me up and spit me out. There were too many major things to juggle, and my body paid the price. I love what I do and really enjoy my students, but I have never been more grateful for the summer break than I am this year. Working on my book full-time and having the flexibility with my daytime hours to do a lot more with my daughter is wonderful. It’s an iteration of the semester: if I am willing to do a lot of work late at night, early in the day, and any spare time, I get to do so much more with my girl—and while the book situation is pretty intense right now, we are having so much fun, and I am really looking forward to the rest of summer and watching her grow and discover new things.

5.Facebook. There are a lot of things I don’t like about FB and I have my personal page fairly limited in terms of access, but there is a lot I find valuable, too. My book page is a good way to connect with readers and have an ongoing conversation, which keeps things dynamic and relevant. I like the power of FB to harness people together for a cause, which is what has it on my bullet list today. My husband’s company, The Well Fed Dog, is supporting dogs/animals displaced by the recent tornadoes in our home state of Massachusetts. For every new FB member who joins/likes the Well Fed Dog Facebook page, we’re donating to the Dakin Valley Humane Society, which suffered significant damage in the storms. So if you’re on FB, click on the page and help the WFD assist these animals in need!

And, because it makes me smile and it’s Friday so why not smile, a recent pic of Baby Girl:

Thursday, May 19, 2011

Parts of this post have been in draft form and swirling around in my brain for months, literally. Sarcastic and quippy wouldn’t cut it. The right jumping off point lest it sound too rant-y or judgmental slipped through my fingers over and over.

And then this: I recently heard about another devastating late-term loss. And it became so clear.

Life, survival, is a blessing, not a guarantee. Motherhood is a privilege.

And besides all the snarky, quippy reasons I absolutely, positively loathe the whole concept of “push presents” this is at the core. The privilege of delivering a live baby? That is the gift, no?

Let me break down my argument a bit. First off, on a semantic level I find the term itself extremely tacky, not to mention offensive. Perhaps I am being contrary me again, but from my perspective, it is exclusionary and implies that only women who have endured childbirth (you know, that process women have gone through since the dawn of humanity, usually without the benefit of pearls or diamonds?) warrant recognition or have sacrificed.

And as for the mothers who must deliver babies far too soon, or babies who were on time but not okay, I truly have no words because my heart does choke and my stomach coils up involuntarily.

Please don’t misunderstand me. It’s the attitude of expectation that is repugnant to me, not the presents themselves. This isn’t an indictment of people who get gifts for having babies. If someone’s partner or spouse wants to commemorate the miracle of birth with a gift, that’s great—and it’s also none of my business, or my place to judge.

No, it’s when it goes too far, it’s about the build-up around it, the speculation and prolonged discussion over the merits of some gifts over others, and the belief that a woman is “owed” something elaborate for having a baby that can sometimes occur that is problematic.

Again: the ability to conceive a baby, carry a baby past viability and into a safer range, and have both mother and child survive the birth process, that is a gift. And the ability to come home with a baby or child, regardless of what process made that happen, the ability to be a parent and help another human being develop into his or her own person? That is a gift.

And really? We must commercialize our lives so much that even birth has its own subset of recommended gifts? Not surprisingly, I feel much the same way about elaborate Mother’s Day gifts but I am sick of my own soapbox so I will leave you with some comments on Mother’s Day from the infertility trenches. Sprogblogger writes,

“This year, I’m feeling overwhelmed with appreciation – for my own mother and my grandmothers and all of the women who have ‘mothered’ me in one sense or another throughout the years. But do I feel like someone should be appreciating me, and the work I do? Not so much – because I feel like I’m the one who’s been given the gift of being allowed to mother, so wanting a pat on the back for essentially eating a cookie someone handed me just feels like the grossest kind of greediness –the cookie is reward enough, and thank you!”

Friday, May 06, 2011

I wrote recently about chronic illness and parenting and have an upcoming post on certain expectations and attitudes about parenting, but in light of Mother’s Day I want to post something briefly about motherhood itself.

Mother’s Day is an interesting experience when you want a family and do not or cannot have one. It was never a day to fear or avoid, since it was a day to celebrate our mothers, but it was also a day with the capacity to emphasize all that was not there, too.

And here we are on the other side, seven months into the privilege of parenting this little girl. It’s such a fun stage right now, where new skills develop practically every day: clapping, waving, feeding herself, cruising around, imitating us. (I am partial to the fake cough when she hears me cough, or her chuckle when she fake sneezes.)

As a mother, since last Mother’s Day I went from waiting and worrying to watching our daughter grow before our eyes. As a daughter, I saw a catastrophic medical event happen and watched my own mother make it through.

So this Mother’s Day, I am profoundly grateful to be a mother and a daughter, and to celebrate life.

And will be thinking of and supporting all the people out there still on this journey…

Wednesday, May 04, 2011

Now, before I launch into my experiences with and take on working from home, I should point out some illness-specific benefits: There is more flexibility to schedule doctor appointments, tests, and daily chest physiotherapy. On “bad” days I can still work, even if means moving my home office to the couch and typing over the nebulizer mask. On days when other conditions flare and I can’t move my legs well (for example) I don’t have to worry about how I will get from point A to point B. Less commuting on public transportation and less time in crowded places during the peak cold/flu season means less opportunity for me to catch things that leave much sicker for longer than the average person.

And of course, when I am in the hospital, my laptop and wireless access mean I can keep on working.

I must admit that there are a lot of positives in working from home when trying to manage a career and chronic illness. It doesn’t mean working less—in fact, one of the biggest challenges is that there is little separation from work life and regular life—it just means it is a little easier to work better when my body gets in my way.

I’ve worked from home in some way or another for nine years now, whether it’s a couple days a week during the semester or full-time doing freelance work and writing books. This Boston Globe piece on working from home did point out some relevant challenges and opportunities of working home. I particularly enjoyed the response to the claim that it is easy to take care of children and get work done—sure, bring your child to your office sometime and see how much work you get done!

Anyway, I think the key to working from home successfully is knowing your strengths and weaknesses and finding a routine that works for you. It’s not for everyone. It can be lonely and isolating. It can be really hard to focus and self-motivate. It can completely usurp your home/family balance. Some people get strength from social interaction and do best when they draw from the energy of a group. Some people need regular check-ins and accountability for best results. The point is, know the conditions that allow you to succeed.

For me, it doesn’t matter how sick I feel or how late I was up working or with the baby; I sit down at my desk in my home office every morning, coffee in hand, and go through my inbox/headlines/social media check-in. I break for a brief lunch. I don’t make or take personal calls during my designated work hours: those hours are scarce and precious to me, and I try to make the most of them. Sometimes I need a change of scenery and go to a coffee shop; other times I know I just need to plow through it without any distractions or stepping away from my computer. I make to-do lists every night before I go to bed.

Oh, and before my daughter was even born I knew I wasn’t going to try a full-time course load with a full-time writing career, a large part of which happens from my home office, without some child care. As I mentioned before, even if it means working many hours late at night and very early, my time with her is about her, and when I am working, I just want to focus so I can get it done more efficiently and therefore, have more quality time with my family.

Boundaries are also fundamental. I think many of us, whether we work from home or not, struggle with knowing when to “shut off” work, and this is especially true when our office is in our home and our deadlines are often self-imposed. It’s no secret that balance is hard for me, and I do think working from home exacerbates that.

But creating our own boundaries is just one part of it. The other part is reinforcing those boundaries with the people in our lives. The expectation we can chat whenever, we can make plans any time of day, etc simply because we are working from home can get frustrating, and if I don’t hold up those boundaries (nicely) I can’t expect others to respect them, either.

Sometimes I feel there is an inherent value judgment that other people’s time is more valuable than mine if they happen to work in a traditional office setting and I am at home, that my time is more expendable.

And in a way, it is—that’s both the challenge of it. If I need to or want to, I can step away more easily. I can take my daughter to music class, or go to another doctor’s appointment, etc and make up the time later in the day or the week (or weekend). I don’t work from home a large part of the time for this—it just so happens that writing, editing, being a professor, and consulting lend themselves to a non-traditional work situation—but it is a major positive that is more important than ever now that I have a child. Yet if I am not vigilant and disciplined, flexibility could become a detriment.

Lastly, working from home leaves me in a weird place when it comes to play dates, making friends with other mothers, etc. I am not away at an office every day of the week (during the semester, 2-3), but I am not at SAHM, either. I don’t make plans for evenings often, even on weekends, because I am usually trying to keep my head above water, work-wise.

These are not complaints, merely observations. I’ve made decisions to bring me to this point, ones I hope set me up for the most success in terms of my health, my careers, and my ability to be the mother I want to be. Like everything, there are compromises but for me and in my personal set of circumstances, the compromises are worth it.

Anyone with tips or observations to share? If you’ve made the switch to working from home, are you glad you did? Did you do it for your health?

I’m working on a piece about Mother’s Day, infertility, and parenting, (and hey, did you know this week is National Infertility Awareness Week?) but I think it’s important to look specifically at the chronic illness aspect of things, too…and as the daughter of a chronically ill person, a patient myself, and the mother of a child with some health issues, I definitely have fodder.

The biggest thing that living with chronic illness has reinforced in my parenting is this: trusting my instincts. Our instincts. We bought all sorts of books and guides before she was born, but once she arrived, we quickly realized that getting to know her and paying attention to her cues was the best guide of all. We trusted her to let us know what she needed, and trusted our own intuition, too.

As a rare disease patient with a history of missed diagnoses, I have learned to be an advocate—to speak up when information is incorrect, to ask questions even when it is uncomfortable or awkward, to make sure my voice and my knowledge of my body and my symptoms are part of the dialogue.

As a parent, my job is to advocate for my daughter and to always work for what’s in her best interest. From firing her pediatrician when he continued to ignore her worsening symptoms to fine-tuning the balance between keeping her away from sick crowds during the winter season since she was very susceptible and also allowing her to socialize (she’s an outgoing girl!), I have more confidence saying “I know what is right for my kid”—and, more importantly, “I know when something is not right for my kid”—than I might have had I not lived through 30 years of illness.

I also think we are both more risk-tolerant than we might have been otherwise, especially me. She was such a tough little survivor all the way through this long journey of ours, and through her own health problems (which are under nice control these days), that it is easier for me to let go of fears and anxiety. I joke when I say it, but there is a lot of truth to the fact that if she could survive 37 weeks inside this body of mine, she can handle what the outside world throws at her.

It’s so easy to get bogged down in the labels and categories that come along with becoming parents (and I don’t mean Bugaboo versus Uppababy): Are you an attachment parent? A co-sleeper, a CIO-er, an E.A.S.Y. parent? Are you a breast feeding mama? Do you give your baby a pacifier, do you wear your baby, do you swaddle? Are you a working mom, a SAHM mom, or some variation of the two?

Parenting is never as black and white as these choices. They might contribute to the much larger picture of who we are as parents, but they are only as defining or absolute as we allow them to be. At least that’s how I feel, and how I feel about the possible implications of being a chronically ill mother. Or rather, a mother who happens to have chronic illness. Just as illness was never what I wanted to define my relationships or my career, it certainly isn’t what I want as a defining element of my daughter’s life.

And it isn’t.

But some days, making sure that isn’t the case takes more work than others.

There have been days where I have been really sick and run down and couldn’t imagine getting out of bed, but a certain squealing, chuckling little girl needed to eat whether I felt well or not. There have been days, especially earlier on, when trying to be the mother of a breastfed infant with health problems and the daughter of chronically ill parents who had their own needs left me flattened. There have been nights where, after another 18-hour day, staying up most of the night to watch her and hold her upright when she wasn’t feeling well was difficult if I wasn’t feeling well, either. But you do what you need to do in the moment and get through it, like any parent. Her needs come first.

Living with chronic illness already showed me how important it is to ask for help. Admittedly, this is much more difficult with my daughter because I want to be the one to do things for her and with her, but this is perhaps the greatest negotiation of parenting with chronic illness: I can’t be what she needs me to be if I am too sick.

It’s a line I am always balancing, and it took me many months to be able to start to make some of those choices—some days, that means she has to wait while I have my chest PT, some days her father does the morning shift, some days I abandon my word count to get some more rest so that the next day, I can give her all the energy I have.

I’ve come to see that those days where I have to shift things a bit still mean her needs come first—it’s just an alternative way of making sure she has two happy, (relatively) healthy parents who can give her what she deserves.

I knew back in December that finding balance would be my main challenge and while I might be self-aware enough to anticipate this, I wasn’t self-aware enough to actually do something about it in time.

During the academic year, I teach a full-time course load, plus other administrative and professional development projects and meetings. I’m also a writer with an impending deadline for an incredibly research-intensive beast of a book. Both are full-time responsibilities.

Like anything, there are compromises and trade-offs to this type of career path, one that is not a traditional office job. I work from home a couple days a week during the year, and work from home full time during summer months. I’ll discuss the pros and cons of working from home in an upcoming post, but the number one benefit of my current career is that it means more time with my daughter than I could ever have in an office job.

(Plus, the health insurance I provide for my family is awesome. Really and truly.)

After all, after working for almost five years and risking my life to have her, I don’t want to miss a thing. This was the promise I made to her and to myself when I went back to work: when I am with her, she gets all of me. No laptop, no hastily typed work e-mails, no frantic checking of the inbox for replies from editors or interviewees or students. I don’t want to be half-present with her and half-present with the other people in my life who need me.

She deserves more than that—and so do my students, and so does my book and all the people who have given me their time and insights during the writing/research process.

Some days (the best days), I am mainly with her. Other days, like when I am on campus, I make sure the mornings and the later afternoons and early evenings are all about her. Luckily, we have had family who have been able to help with watching her some of the time, and a wonderful caregiver some of the time, and the more flexible nature of my work demands means that most of the time, I spend a lot of time with her and make up what I need to do for work at other times in the day. I know we’re fortunate to have help, and I know not everyone does.

In terms of being with her and watching her grow from a precocious 4-month-old just starting to sit on her own to a chatty, giggly little girl who feeds herself and loves turning the pages of her books, in terms of being an active, engaged participant in her everyday life and routines, I have no regrets. I never felt my work took away from her, or took me too far away from her. In this way, my semester was a success.

But, a full-time workload plus a book plus daily chest PT (and all of the logistics of her health needs and doctor appointments) and everything else means that making up what I need to do was pretty challenging. For a lot of the semester, it meant staying up very, very late and getting up hours before my daughter woke up to get stuff done. It meant working almost every single Friday and Saturday night and during weekend mornings and naptimes. And all of that is clearly worth it, because it means I get to pick her up from her crib when she is all smiley and up from her nap, or take her to all her doctor appointments, or watch her devour her sweet potatoes or gluten-free snacks.

However, a schedule like that is not sustainable, not for healthy people and certainly not for people with chronic illness. (Oh, hey, and it goes against practically everything I’ve written about here and in my book, too.) It’s almost May, and the infection I caught at Christmas is still recycling itself through my lungs and upper respiratory tract and causing problems. By February, I started noticing my lung capacity was limited enough that I had a hard time walking through campus and talking at the same time. By March, my adrenals started acting up and some days, my arms and legs were so heavy and concrete-laden I needed a ride to and from work because I couldn’t get myself from my parking garage to my building on the other side of campus.

I realized a bit late in the game that all of this hard work would be for naught if it meant I was too sick to be what my daughter needs from me. Duh, right? My health affects her. What good are the carefully preserved hours with her if I can’t lift her, or take her places, or play games with her?

I’d like to say I had this huge revelation and made all sorts of drastic changes, but responsibilities are what they are. I did need to prioritize even further, though, and that meant letting go of some expectations of how much research and writing I could do during the semester. I don’t get up well before dawn anymore. I try not to schedule activities on both weekend days. I tell myself regularly (no really, I do—I find I have to repeat it to myself) “all you can do is what you can do” and what I can’t get done I leave behind me when I go to bed at night.

My husband, a fantastic father and a wonderful support system, now has a little more flexibility with his time since starting his own business, and that’s made a huge difference. (Even though he’s pulling very long hours himself, it’s amazing how much more time he has to see her now that he doesn’t have an hour-plus commute on the T every day and can walk to his nearby office.)

In the end, I made it. I made certain decisions that upheld certain priorities and I made it through. We made it. Since I don’t plan on ever having a baby and an enormous book due at the same time again, I do think life will be more manageable from here on in. This semester, my body paid some of the price but that means my daughter and my students did not. The beauty of teaching is that next semester, I can try it all over again and hope to do much better at this whole balance thing.

(And between now and then, I’ll finish that book. There’s nothing as clarifying as a deadline…right?)

I know so many of you out there have done this whole working-parenting-being sick juggling act much longer than I have. Any words of wisdom (or, moments of defeat) to share?

Thursday, April 21, 2011

I do plan to post something coherent about work, chronic illness, and parenting very soon, but right now, while I am limping across the finish line of the semester, indulge me in some more unstructured thoughts on being a parent.

Time. As I taped my daughter’s Easter picture to the refrigerator this week, I realized a few things: this was the first time my own child’s holiday picture kept her cousins’ pictures company up there; this time last year, we already had three (of many) ultrasound pictures up there to greet us every time we went into the kitchen; it was this week last year that I finally went public about being pregnant. A year ago April 16, I felt my daughter move for the first time, and this year, almost to the day, she cut her first tooth and balanced on her own standing up for a few seconds. It is hard to wrap my head around everything that has changed in this past amazing and challenging year.

Relief. I was back at my (our) hospital for an appointment of my own this week. I’ve done my very best to avoid going back there, having spent far too much time there during the pregnancy. Anyway, it is such a different experience evaluating pulse oximeter results and medications without worrying about the impact of the numbers on a growing baby. Knowing her welfare is no longer tied so wholly and viscerally to my own health is reassuring, yet the relationship between my health and what is best for her is still a regular negotiation: to be the best mother I can be for her, I need to feel as well as I can. (See also: upcoming post on balance….)

Gratitude. “Every morning is kind of like Christmas morning.” We agreed about this the other night. It was almost 1 am and we’d both had a very long week, but none of that mattered, or matters. Knowing there is a wriggling, giggling little girl waiting for us every morning often makes it hard to sleep.

And, in lighter terms…Humility. I was getting a bit cocky last weekend. In one day, I’d managed the logistics of swimming class, a play date, and a birthday party with nap time and meals (and final papers! And work deadlines! And a nasty, plague-like virus thing, oh my!) and everyone was intact and smiling. Clearly, I was too confident.

As I went to fold up the new stroller and head to our final destination, I could not figure it out. Like, 10 minutes into it, sweating and exasperated, I still couldn’t fold it up. I pulled tabs, I pushed bars, I moved wheels. I may have sworn a few times, and I may have even tried shoving the whole thing in the back still upright. With the guy who was waiting for my spot impervious to my motions to move on, I got more flustered and more inept. Eventually, he got out of his car to help me and he couldn’t do it either, but that didn’t make me feel better because I’d had lessons. Fearing a situation just like this, my husband, who is used to the manifestations of my spatial relations problem, had walked me through it several times. Thankfully, a second passer-by, the mother of twins, hopped out of her car and came to our rescue.

So a good fifteen minutes after I buckled my daughter into her car seat and tried to leave the parking garage, I was ready to go. The only upside is that this time, I hadn’t gotten lost actually getting to my car, which is a routine occurrence in parking garages.

Thursday, April 14, 2011

As a patient, it is always pretty neat to see health-related issues I care about handled in the mainstream media. And when they are handled well? When there is research and depth and narrative all packaged in an accessible yet thoughtful way? That makes me smile.

As a writer, it is a whole different kind of experience to see issues I am so heavily invested in researching and writing appear in popular mainstream media. As many of you know, I am publishing a second book, and it is a social history of modern chronic disease. It is a project that involves an extraordinary amount of research, reading, and interviewing, and interviews aside, most of it takes place by myself, often late and night and before the sun rises. It is an exciting endeavor, but sometimes an isolating one.

So when I read an advance copy of “The Stigma of Illness” that appears in the May Issue of Woman’s Day (on newsstands right now), I was excited. The stigma around illness, including issues of gender, socioeconomics, and politics, is, quite obviously, a major element of the book.

And when I saw research that I’ve used in my own work for several years and discussion of ideas I’ve carried with me everywhere I go for such a long time, I was hooked. People are talking about this stuff. People realize stigma matters.

The article looks at the judgments and blame often placed on patients, particularly those who live with conditions where individual behavior often plays a role in transmission or severity of illness. Individual responsibility for behavior versus genetics or random chance is a comparison I find fascinating, and the inherent (and harmful) hierarchy of patients it sets up is one the most compelling and thorny issues in modern chronic illness.

“For years, social scientists such as Gregory Herek, PhD, a professor of psychology at the University of California-Davis, have been trying to unravel why certain conditions seem to carry “marks of dishonor,” writes article author Joan Raymond. “Their conclusion: Whenever there’s a widespread perception that something can be attributed to personal weakness or poor lifestyle or moral choices, that disease is going to be stigmatized.”

So why such an article right now? Amy Brightfield, a health editor at Woman’s Day I spoke with yesterday, acknowledges these issues have always been in existence, but play an even larger role in public discourse right now, especially when it comes to health care reform and health insurance coverage.

“People talking more and more about what should and shouldn’t be covered…illnesses that tend to get stigmatized don’t tend to get covered as well,” she says. She points to mental health problems a prime example. “You have to prove some physical concrete toll it is taking, which why it is so hard to get coverage for mental health because of the stigma.”

With profiles of three women living with some of the most heavily stigmatized conditions—AIDS, lung cancer, and bipolar disorder—the article does a good job of laying bare the tension that exists when morals, person decision-making, or sanity are questioned as a result of physical illness. The non-smoker who contracted lung cancer anyway and the AIDS patient who contracted the virus in a monogamous, heterosexual relationship profiled in the article know firsthand how painful judgments and assumptions about lifestyle and worth can be.

And of course these are just a few of the illnesses where individual responsibility for behavior is called into question. Obesity and its attendant complications are at the top of the list, too. Brightfield, who is working on a story right now about different communities’ initiatives to reduce obesity and conditions related to it, says personal responsibility is only part of a more complex problem. It’s one thing to say people should eat right and get more exercise, but if you live in an area where fresh produce is hard to find, if you can’t afford a gym membership, can’t walk to school or work, etc, it isn’t as easy or obvious.

“The modern world is not conducive to exercise and making healthy choices about food,” she says.

Turning back to the women profiled about stigma, it is clear that gender often underlies judgments about illness, particularly since more of the nebulous conditions like Chronic Fatigue Syndrome or fibromyalgia, which are harder to isolate biological causes for, affect more women than men. Given the historical context of “hysterical illness” and the huge differences in acknowledging and treating chronic pain in men versus women, there is clearly a lot more to be said about all of this (trust me, I’m working on it!)

Still, as Brightfield points out, and as many patients I’ve spoken to concur, stigma is not gender-specific. Even if we just look at men living with AIDS or lung cancer, it is clear that gender may be a dominant force but it is not always a defining force.

Stigma is equal-opportunity. And because we’re all living with a constellation of hereditary, environmental, socioeconomic, and other lifestyle factors, it’s not our place to assume or blame.

“Don’t judge anyone because they are sick….that’s why we did the story, to show that people get stigmatized…in the illnesses that we featured here, you don’t know the whole picture medically because you are not the doctor,” says Brightfield.

How many times have you felt blamed or judged for your illnesses, whether implicitly or explicitly? Was it by a doctor, a friend or loved one, or even a total stranger?

To read more about this, and perhaps to empathize and commiserate with the brave women featured in the article, make sure you check out the latest issue of Woman’s Day.

Wednesday, April 06, 2011

In five years of marriage, we’ve acquired two rescue dogs, two different homes, two graduate degrees, four new jobs, two book deals, and after a long (long) journey filled with more challenges and compromises than we ever imagined, we are parents to a fiercely loved little girl.

And now it’s time to announce the next big venture. I am incredibly proud and excited to tell you that as of today, my husband’s new company, The Well Fed Dog, is up and running. If you’ve read the posts about gluten-free cooking on this blog, you know we are both passionate about eating whole, healthy, fresh foods. With experience as a line cook and restaurant manager before he went into banking, John is the one who executes our culinary adventures, and he is happiest when in the kitchen.

If you know us in real life, you know we’re both insanely passionate about our two rescue dogs, and dogs in general, and making sure they are as healthy and happy as possible. (And yes, one of our dogs has a major food allergy, so we know how important knowing what’s in your dog’s food and knowing where those ingredients came from really is.)

Now, John has combined these two passions into The Well Fed Dog, which delivers fresh, all natural, grain-free dog food. All ingredients are human-grade and hand-selected, and all recipes are carefully formulated to meet dogs’ special nutritional needs. The Well Fed Dog also offers locally made treats and eco-friendly chew toys, as well as a totally customizable membership plan and benefits. You can find out so much more about the mission, philosophy, and product offerings by checking out The Well Fed Dog’s brand-new Web site.

This has been a long time in the making, and comes from the heart. It is a big change for him and for our family, and having him doing something we both believe in so much is an amazing opportunity.

So many of you have watched big events unfold in our lives through this blog, and have been such a source of support and encouragement, and I am happy to be able to share this news with you. Whether you’re a dog lover or someone who knows dog lovers, there are lots of way we’d love for you to be involved and spread the word:

Tuesday, March 29, 2011

One of my favorite things is the deliberate, languorous stretch of the newborn: their little bodies uncurl themselves s-s-l-l-o-o-w-w-l-ly, with chins jutting out, heads moving side to side as if to protest “No! I won’t rouse!” while their elbows push out and their tiny little knees bunch up.

This little ritual, usually precipitated by the lightest of feathery kisses on her soft cheek, was, for many months, the best way I could ever imagine starting our day.

Now, the ritual is louder, more active: I hear her laughter and squeals of delight and lay still, ears poised to catch the consonant-vowel combinations she so casually drops into her stream of babbling come through the monitor. I hear the distinct “thump” as she kicks the crib mattress and wonder what position I will find her in (we don’t like to repeat our geographic feats, you see.)

I walk softly into her room, undetected for a moment. She is usually busy chattering conspiratorially with her lovey, and when she looks up and sees me there, she is a wriggling, giggling, gasping bundle of exhilaration. No doubt about it, she is ready to start her day.

Those moments, when we meet eyes and she laughs and smiles and her arms thrash and her legs flail and if she could, she would bound out of her crib and into my arms completely by her own volition, are the best way I could ever imagine starting a day.

It hit me recently that this other routine of ours, this rhythm we found, also means the slow, lazy stretch of the newborn is no more. Never more.

I want to carve that image into my memory permanently, so it does not slip away the way time seems to these days. I don’t want to say this is bittersweet because there is no bitter. Just a wistfulness, and the exhortation that time must slow down. Not because I want her to stay a baby—knowing her sparkly self now, I cannot wait to see the person she becomes. But rather, because as I sometimes whisper in her ear at night when she curls up on my shoulder and settles in for a sleepy hug,

Friday, March 25, 2011

So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!

Wednesday, March 16, 2011

It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy--just let her be okay--sustains us still.